Taking Ownership

“I don’t believe you have epilepsy.”

I was afraid to look too excited at what the neurologist said, afraid to want something so much that I’d make it happen. I pushed the heels of my hands down into the vinyl seat of the chair. I looked at the oatmealy floor. “I don’t?”

“You don’t.”

A year ago, I took ownership of epilepsy. That word. My diagnosis didn’t change my reality, but it sure as hell changed my feelings. It changed my routine. More sleep, no booze, less stress. It changed my future. This was my new life.

Two months ago, I stepped out of a Sprouts market and into the sun. I’d only been inside for five minutes to use the restroom. I stalled on the sidewalk, blank. I had no earthly idea where I’d parked my car. It didn’t take long for fear to settle into the spot where a simple memory of my parking spot should have been. Did I park on the right? The left? How far back? Was I even parked in the lot? I was scared. How could I not hold a thought for five minutes? If I stood there, would it come to me? It did not.

Three months ago, I sat down at a table under the redwood in our yard to review a novel for Kirkus. I’d read the book. I’d made notes. I had opinions. I’ve written countless reviews. Pull quotes from the text. Fight through frustration. Explore. But that day, language failed me. Every tenth or so word felt like it was behind a cloud, inaccessible. I just couldn’t remember them. Not complicated words. Words like ordinary. Words like compare. Words like implication. Being unable to conjure your own language is terrifying.

Fall 2017: Struggling so hard. Headed for a seizure.

A year ago, I woke up from a nap with my face covered in blood. My tongue was split on the side where I’d mashed it between my molars. I felt misery, head to toe. Stiffness, a cold dread. I submitted myself for prodding and scanning: EEG. MRI. Neurology. Referral. After that seizure and a series of subsequent episodes where I bit my tongue in my sleep, my doctor prescribed Topamax to address my dual brain issues: epilepsy and chronic migraines. Topamax is no joke. It requires gentle ramping up; it makes the patient lose weight, and it affects cognition more than a little. Soon after beginning the drug, I was plodding around, dazed. I was tired all the time. My thoughts were unclear. My doctor assured me that the fogginess would settle.

It didn’t settle.

First to go were names. I would be telling a story, and I’d forget the name of a coworker I’ve worked with for over ten years, someone I talked to daily. Was I good at covering and laughing it off? I didn’t want to think about that for too long. I developed tricks to mask my blank memory. “Tell me your last name?” I would say as a student of six months came up to ask me about her grade. I relied too heavily on the class seating chart. Thankfully, none of my students called me out. My friends kindly ignored my pauses. After names, I lost chunks of text. Stories I knew and had taught for years disappeared from my mind. When my students would ask about something they read in the chapter the night before, I’d say “show me where in the chapter that is?” and hope (again) the moment would pass. I struggled to pull my thoughts together about a book. My ability to connect anything was gone.

Topamax affects speech and memory in the brain. Aphasia–difficulty with speech and language–is just one of its side effects. So are memory loss and confusion. After months of Topamax, I was “losing farther, losing faster…” like some fucked up “One Art.” I tried to write that review for two hours in our backyard, then I went to find my husband. “I can’t write,” I said, feeling the prick of tears in the corners of my eyes. “Not like I don’t want to, or I don’t know what I want to say. I can’t find my words. I can’t get to them.”

I was sad and confused. I tried to continue with both of my jobs: teaching English to reluctant high schoolers all day, reviewing books in the wee hours of every morning. But I couldn’t concentrate–not on my own narrative or any story. I define myself entirely in terms of comfort with language. Everything I do involves words. The phrases we own and the stories we remember become our personalities. I’m wary, when I write, of my syntactical habits; I’m suspicious of what writes easy. But I know I have to write to survive. Both of my jobs require fluency, ownership, and memory. I love to find patterns, to connect disparate ideas. What does a novel mean? How can I capture the diction of a passage? Does this book do what it sets out to do? How do we access the world it describes? What questions does it ask? Topamax blurred those thoughts. Every page I read was separate. Each sentence, its own thing. Teaching was exhausting. Reading and writing were near to impossible because the Topamax moved into my head.

People in epilepsy forums call it “Dopamax.”

Two months ago, after losing my car, I told my neurologist I wanted to wean off of the drug. I wasn’t living if I couldn’t write or speak. “I’m done. I can’t take this anymore,” I told him. He gave me instructions to stop taking the drug. But to my horror and surprise, he also told me flatly that if I stopped, I was at risk of dying suddenly in my sleep. People with nocturnal seizures are at risk for SUDEP: sudden unexplained death in epilepsy, he said. Off the drugs, the risk increases. At no point in the last year did he bring up SUDEP; it only came up now as a threat to make me take the medication. My feelings about sleep became complicated, which isn’t good for someone trying to avoid nocturnal seizures. I did a lot of crying. I took Topamax for two more weeks, but I didn’t feel like myself. I talked to my husband and finally decided that fear of dying was keeping me from living. I weaned myself.

Off the Topamax, things brightened. I found words. Clarity returned to my brain like blood through a sleeping limb. It was time for a second opinion.

This Thursday, I sat in an office at a local epilepsy center. I recounted my story to a different neurologist who specializes in epilepsy and seizures. He’d already reviewed my record. He listened patiently for a half hour as I gave him dates and symptoms, my story of observations and lists. He asked specific questions about each episode where I’d bitten my tongue. He agreed that my initial episode was a seizure, caused by sleep deprivation and stress. But he had a different opinion than my original neurologist about my subsequent episodes of tongue-biting.

“I don’t believe you have epilepsy,” this new neurologist said.

A year of Topamax. A year of fog, and panic, disordered memory. A year of teetotaling. A year of consternation. Laconic speech. Panic about death in my sleep.

“I don’t?”

“You don’t. I believe you had one seizure, but the rest of these ‘episodes’ aren’t actually seizures. I think you damaged your tongue during your seizure, and now it’s sensitive. I think the biting is caused by your tongue resting between your teeth. We know your seizure’s cause–sleep deprivation–and if you haven’t had another one, you don’t have epilepsy.”

I don’t have it. That word. Now I’m hoping to take the rest of them back.

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2 thoughts on “Taking Ownership”

HSP: Oh my. This made me sad, angry, joyful and afraid all at once.Thanks for having the guts to take me there. I was prescribed Topamax years ago for my migraines and I didn’t last past the first dose. Count me among the many who are cheering as you corral those words and bring them to heel.